Back To Normal
This week has been pretty good. I am eating better and can keep my food down. Everyday I eat a little more. My acid reflux was holding me back I had about a weeks worth of bad mornings where I'd wake up puking. Not fun. This morning was my best morning since last Monday so hopefully things are under control and back to normal. My surgeon called Mommy and told her we were going to wait on tests until I started showing signs like I didn't this past time. So as long as I am doing alright and tolerating everything fine I don't have to go back!!! OT went well last week I didn't eat a lot, but I ate more and tried harder than anyone expected me to since it was so soon after my dilatation and my acid reflux had been so bad. Other than that nothing has changed. Mommy and I have been staying home because it seems like a lot of our friends and family are sick so were playing it safe and getting things done around the house. Please continue to pray for my esophagus to stay open and for my acid reflux to stay under control. Thank you so much!
P.S. I will try to upload pictures sometime soon. If not before next Tuesday then I'll just add more that day. :)
Tuesday, March 25, 2014
Tuesday, March 18, 2014
Long week
This past week has been super busy and not so great. In last weeks post I talked about how I wasn't able to eat without coughing things back up. Mommy was really worried so Wednesday she called my surgeon and they scheduled a test called an Esophagram the very next day (Thursday) this test allows doctors to see how well fluids go down my esophagus along with showing how big or small it is. The test showed they I had a stricture which means it was narrowing where she had attached it. It wasn't as bad as it has been in the past, but I thought this could be why I was having trouble eating so then they scheduled a dilatation for yesterday (Monday) this is where they stick a tube down my throat that has a balloon attached to it and they fill it up and stretch my esophagus back out. When I was smaller they would fill it with 10ml of fluid, but now that I am bigger they went to 12ml and everything went as planned. I have a certain doctor that Mommy, Daddy, and I love. He saved my life a year and a half ago and he was there yesterday by my side the whole time so that was nice!!! I used to have to spend the night to make sure everything was okay for 24 hours, but my surgeon allowed me to come home last night after I ate a whole popsicle and kept it down. The doctor said I could eat cool, soft stuff and then begin with my normal diet the next day (Today), but I was unable to keep things down last night and had a horrible time with acid reflux through the night and this morning. Once I got my day going I did much better I am not back to my normal diet because Mommy wants to make sure I can handle it and I only puked once today so that's a good sign! We've really just been focusing on that stuff for the last week. I obviously couldn't go to OT and I don't think we're going back until we get another esophagram done that shows I am ready. Please pray that I can eat whatever I want and it goes down smoothly and stays down and that my next test brings good news! Thank you so much.
As long as he had a phone he was good to go
:)
Waiting!
Hospital clothes
So cute
LET ME OUT!
Walking to get a toy
My new toy
Of course it involves a car
Everything went as planned!
Ready to leave!!!
This morning after having a horrible night.
Woke up smiling. So tough!
This past week has been super busy and not so great. In last weeks post I talked about how I wasn't able to eat without coughing things back up. Mommy was really worried so Wednesday she called my surgeon and they scheduled a test called an Esophagram the very next day (Thursday) this test allows doctors to see how well fluids go down my esophagus along with showing how big or small it is. The test showed they I had a stricture which means it was narrowing where she had attached it. It wasn't as bad as it has been in the past, but I thought this could be why I was having trouble eating so then they scheduled a dilatation for yesterday (Monday) this is where they stick a tube down my throat that has a balloon attached to it and they fill it up and stretch my esophagus back out. When I was smaller they would fill it with 10ml of fluid, but now that I am bigger they went to 12ml and everything went as planned. I have a certain doctor that Mommy, Daddy, and I love. He saved my life a year and a half ago and he was there yesterday by my side the whole time so that was nice!!! I used to have to spend the night to make sure everything was okay for 24 hours, but my surgeon allowed me to come home last night after I ate a whole popsicle and kept it down. The doctor said I could eat cool, soft stuff and then begin with my normal diet the next day (Today), but I was unable to keep things down last night and had a horrible time with acid reflux through the night and this morning. Once I got my day going I did much better I am not back to my normal diet because Mommy wants to make sure I can handle it and I only puked once today so that's a good sign! We've really just been focusing on that stuff for the last week. I obviously couldn't go to OT and I don't think we're going back until we get another esophagram done that shows I am ready. Please pray that I can eat whatever I want and it goes down smoothly and stays down and that my next test brings good news! Thank you so much.
As long as he had a phone he was good to go
:)
Waiting!
Hospital clothes
So cute
LET ME OUT!
Walking to get a toy
My new toy
Of course it involves a car
Everything went as planned!
Ready to leave!!!
This morning after having a horrible night.
Woke up smiling. So tough!
Tuesday, March 11, 2014
Surgeon Update
Hello everyone! I saw my surgeon last Thursday and she was not pleased with the specialists decision to put baby food through my g-tube, but said since we feel it is helping and I am tolerating it just fine to keep on doing what we're doing. YAY!!! She is also letting us try formula to see if I can tolerate that, that way we can work up to just g-tube feeds and hopefully get rid of the j-tube. She said everything else looks great and we don't have to go back until June. I go to see the feeding specialist the 17th so hopefully we can raise the volume of baby food and get me use to a little more. I have been coughing a lot of things up. Mommy thinks it might be 1 of 3 things, 1. I need a dilation (Which would suck) 2. I eat by mouth too soon after I eat through my g-tube (Not very likely, but were going to test it out) 3. I have learned by doing this I get attention and most of the time I don't have to eat anymore afterwards (Likely since I've been Mr. Attitude lately) My surgeon said we'll notice drooling if I need a dilation which I haven't had nor have I had trouble drinking water so that is a plus. I will keep everyone updated on this issue. In the mean time please continue to pray for me. Pray that I stop coughing food up and tolerate all my feedings. Thank you and enjoy my photos.
Being goofy
Sad that Mommy wouldn't let me in the kitchen
Having fun while waiting to see my surgeon
Mommy and I played with my truck while we waited
I love my four wheeler
Kickin my feet up :)
Playing cars on my snack tray
I love the bathroom rug
And the bathroom has a car wash :)
This is the only place I'll wear a sticker
Picking out my birthday gifts while mommy changes my diaper
My ornery face.
Learning to bowl
Hello everyone! I saw my surgeon last Thursday and she was not pleased with the specialists decision to put baby food through my g-tube, but said since we feel it is helping and I am tolerating it just fine to keep on doing what we're doing. YAY!!! She is also letting us try formula to see if I can tolerate that, that way we can work up to just g-tube feeds and hopefully get rid of the j-tube. She said everything else looks great and we don't have to go back until June. I go to see the feeding specialist the 17th so hopefully we can raise the volume of baby food and get me use to a little more. I have been coughing a lot of things up. Mommy thinks it might be 1 of 3 things, 1. I need a dilation (Which would suck) 2. I eat by mouth too soon after I eat through my g-tube (Not very likely, but were going to test it out) 3. I have learned by doing this I get attention and most of the time I don't have to eat anymore afterwards (Likely since I've been Mr. Attitude lately) My surgeon said we'll notice drooling if I need a dilation which I haven't had nor have I had trouble drinking water so that is a plus. I will keep everyone updated on this issue. In the mean time please continue to pray for me. Pray that I stop coughing food up and tolerate all my feedings. Thank you and enjoy my photos.
Being goofy
Sad that Mommy wouldn't let me in the kitchen
Having fun while waiting to see my surgeon
Mommy and I played with my truck while we waited
I love my four wheeler
Kickin my feet up :)
Playing cars on my snack tray
I love the bathroom rug
And the bathroom has a car wash :)
This is the only place I'll wear a sticker
Picking out my birthday gifts while mommy changes my diaper
My ornery face.
Learning to bowl
Tuesday, March 4, 2014
March Already
Wow time is flying by! I've had a good week. For some reason I haven't been very excited to go to OT especially when they call us back, but once I'm in the room and see my chair I'm fine. Hopefully this is just an attitude thing. Other than that OT has been good. Speaking of attitudes though, mine comes and goes a little too much, I am starting to hit and throw myself backwards. When I get mad it doesn't last long before it turns into being sad and wanting to be held by Mommy or Daddy (usually the one that disciplines me) then I'm all better and ready to go off and do whatever. We're working on it :) My rash is still present, but its getting better everyday and doesn't hurt to touch anymore. I am still on my antibiotic so hopefully before I'm totally done with it my rash will be completely gone! I am still tolerating my g-tube feeds and I am eating by mouth more than I ever have. We go see my surgeon on Thursday, we haven't seen her since before I started my g-tube feeds and she knew nothing about it so we're a little worried what she might say. On the other hand what can she say? I am doing great and we fill that eating through my g-tube is helping. The specialist was supposed to talk to her so hopefully we're all on the same page. I am still going pee in the potty! My favorite part is flushing the toilet!!!
Eating!
Such a big boy
Just chilling
Pretending to drive
I had so much fun
Wow time is flying by! I've had a good week. For some reason I haven't been very excited to go to OT especially when they call us back, but once I'm in the room and see my chair I'm fine. Hopefully this is just an attitude thing. Other than that OT has been good. Speaking of attitudes though, mine comes and goes a little too much, I am starting to hit and throw myself backwards. When I get mad it doesn't last long before it turns into being sad and wanting to be held by Mommy or Daddy (usually the one that disciplines me) then I'm all better and ready to go off and do whatever. We're working on it :) My rash is still present, but its getting better everyday and doesn't hurt to touch anymore. I am still on my antibiotic so hopefully before I'm totally done with it my rash will be completely gone! I am still tolerating my g-tube feeds and I am eating by mouth more than I ever have. We go see my surgeon on Thursday, we haven't seen her since before I started my g-tube feeds and she knew nothing about it so we're a little worried what she might say. On the other hand what can she say? I am doing great and we fill that eating through my g-tube is helping. The specialist was supposed to talk to her so hopefully we're all on the same page. I am still going pee in the potty! My favorite part is flushing the toilet!!!
Eating!
Such a big boy
Just chilling
Pretending to drive
I had so much fun
Subscribe to:
Posts (Atom)